What It Feels Like to Have Dementia

Virtual Dementia Tour: Interview With P.K. Beville
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Geriatric specialist P.K. Beville founded Second Wind Dreams in 1997, naming it after her novel about the varied lives of people who live and work in nursing homes. The company aims to fulfill the dreams of seniors, while also providing education about dementia to caregivers and communities. Beville's Virtual Dementia Tour is an experiential tool that helps create a firsthand understanding of what it feels like to have the disease.

"While it is difficult for anyone to know how it really feels to walk in the shoes of a person with Alzheimer's disease or a related dementia, the Virtual Dementia Tour gets you very close to that reality," says Carol Steinberg, chief executive officer of the Alzheimer's Foundation of America. "This inside look can help family and professional caregivers better understand this devastating brain disorder, adjust how they provide assistance with activities of daily living, and soften their own reactions to behavioral issues -- ultimately resulting in more optimal and compassionate care."

Beville is the CEO of Second Wind Dreams and the inventor of the Virtual Dementia Tour.

What were your first steps in developing the Virtual Dementia Tour?

P.K. Beville, founder and CEO: I began serving geriatrics in 1983. Back then things were very different. Lots of chemical and physical restraints and a horrible warehousing atmosphere. From the beginning, I was amazed at how resilient the residents were in light of their circumstances. In addition, it was fascinating to see how people with dementia started becoming aware of their environment the more I talked with them. Their scores on the psychological evaluations improved after just a few minutes. I was hooked on dementia then and fascinated by how the brain was working.

The first steps in the development of the VDT began then. I started observing, planning programs, doing in-service training, studying what worked and what didn't in the care and treatment of dementia. I had the best of all worlds: the residents (called patients back then), staff that wanted to learn, and many different eldercare communities to draw from. I learned pretty quickly that the treatment of dementia was directly related to the knowledge that the staff received, and the staff received information most quickly when they could "see" what I was teaching them. I used visual imagery, role playing, demonstration, modeling, and behavior tracking. The basic question I was asking them was, "What would you do if this was you?" -- but there was a seemingly impossible disconnect. Dementia is one of the only disease states that doesn't allow us to determine the damage it is causing by using traditional medical-model methods. Worse yet, the residents can't tell us what is happening; we can only see it as the symptoms it manifests, and many of those manifestations are behavior problems.

How did you conceive of the tools necessary to simulate sensory impairment and confusion?

PKB: My dissertation for postgraduate work was to determine whether it is necessary to be sensitized to dementia to provide good care. Good care was defined as lessening challenging behaviors as reported on the Minimum Data Set (MDS). First, I researched which parts of the brain were most damaged as dementia progresses. I also researched the most common age-related physical decline. Then I started trying to figure out how these things are manifest in behavior and symptoms. This allowed me to mimic those brain and physiological changes in a normal person. Each of the patented components of the VDT has been researched and validated for its accuracy. Because I decided to couple the cognitive and physical decline, we see a more complete dementia profile. In fact, participants in the VDT look and behave exactly like those with the disease.

With the components of the VDT, those who experience the tour actually feel like they're walking in the shoes of a person with dementia. How would you describe the way it feels to walk in those shoes?

PKB: The responses from participants are pretty consistent with the overriding themes below:

  • I felt isolated.
  • I wanted someone to show me what to do.
  • I was frightened.
  • I couldn't focus on what I was supposed to do.
  • The sounds in my head made it impossible for me to pay attention.
  • I gave up.

Our study, "Self-Reported Behaviors Before and After the Virtual Dementia Tour," available at http://www.secondwind.org/files/documents/VDT_TEDMED.pdf, provides an analysis of data that shows a clear delineation of increased understanding of dementia after experiencing the Virtual Dementia Tour.

Have you seen an improvement in the quality of dementia care as a result of the insight caregivers receive from the Virtual Dementia Tour? In other words, how does this educational program affect the residents at facilities where it's implemented?

PKB: The feedback we receive from eldercare communities is very positive. I designed the VDT to be a hands-on experience, with the follow-up to your question to be conducted by the community to determine the changes in care. We have received one study from an organization based in Calgary, Canada, that shows that the VDT's impact on care was still being seen six months after experiencing the VDT. In another study, it was reported that the VDT should be conducted with staff a few times a year before they start to see a change. Second Wind Dreams has entered into a research phase of the VDT and its impact on care. The research will begin this fall and will include some of our VDT certified trainers in the protocol. This allows us to derive results across cultures and eldercare settings.

You have versions of the VDT tailored to families, groups, and communities. How is each edition customized to best reach its target audience?

PKB: Each edition of the Virtual Dementia Tour is tailored to meet the needs of each specific user group. The impact is tremendous, and many consider it to be life-changing. When we studied the general population's response to the VDT versus the care providers', the results were the same.

To date, more than 500,000 people in 17 countries have experienced the Virtual Dementia Tour, which is now available in seven languages.

The Group Edition is tailored to the eldercare field. The difference in this edition is that it allows the entire staff to learn from each other in a structured, facilitator-guided training. With the staff talking about the experience with each other, the facilitator starts drawing conclusions and strategies directly to the residents that are being served there. This enhances the likelihood that the staff will take new information drawn from their own experience directly back to the floor.

The Family Edition was designed to be conducted in the home. Each family member goes through it and then discusses how the experience relates to their loved one. There is a guide that helps them begin to establish new roles and responsibilities along with general strategies for each person. There is also a DVD included that shows a family that has just been through the VDT, so that the door is opened for discussion.

The Community Edition has been designed to start the dialogue in local communities about how we can serve this burgeoning population. My concern is that as long as we continue to wait for a magic pill for dementia, we will be in such a frightening healthcare quandary that we will continue to overmedicate, prematurely admit, and, most of all, lose a vital part of our community. It is designed for city planners, community groups, and businesses. It is also used by companies to heighten the sensitivity of their employees.

As a funding resource for Second Wind Dreams, anyone who purchases an edition of the Virtual Dementia Tour is simultaneously donating to fund the dream of an aging person. How did you decide on this reciprocally beneficial structure?

PKB: It really wasn't much of a decision. After I founded SWD in 1997, I learned pretty quickly that it was extremely hard to help people understand that it doesn't take much to make a dream come true for our elders. Once I began working on the dissertation, I began studying the impact in some of our SWD eldercare communities. I also had the benefit of assistance from some of my colleagues and board members. It never occurred to me that the VDT would become a revenue stream for the nonprofit, but once it was clear that we could use it as an ongoing support for the dreams, it was a natural decision. Many of the dreams that come true today are a direct result of the use of the VDT.

What are some things caregivers and family members have said following their VDT experience?

PKB: The hardest response to hear is from family members who come out of the experience very moved and say, "I wish I had known." The VDT facilitators are trained to respond by letting the family know that the new knowledge they have now will help them in the future, and the regret that they are feeling now is good news because they know that there are better ways to treat their loved one.

What are some tips or insights you would give to dementia caregivers, families, and communities who have not yet experienced the Virtual Dementia Tour?

PKB: I would urge anyone who wants to gain a greater understanding of Alzheimer's disease and related dementias to pursue an opportunity to take the Virtual Dementia Tour. Those who have gone through the Virtual Dementia Tour find themselves immediately identifying with their family members.

The same is true for professional caregivers. Once they walk in the shoes of a person with Alzheimer's disease, they become more patient and more understanding and find themselves looking for solutions that do not include increased medication and expensive inpatient hospitalization.

How do I contact a Virtual Dementia Tour-certified trainer who can conduct a VDT event for my organization?

PKB: Visit secondwind.org for a complete listing of the more than 60 trainers listed by state.

Where can people go to learn more about Second Wind Dreams and the Virtual Dementia Tour?

PKB: For more information about Second Wind Dreams and the Virtual Dementia Tour, visit www.SecondWindDreams.org, www.Facebook.com/SecondWindDreams, or follow them on Twitter with @SecondWindDream.